MEDICAL ADVICE - PLEASE ACKNOWLEDGE YOU HAVE RE... - Thyroid UK

Thyroid UK

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MEDICAL ADVICE - PLEASE ACKNOWLEDGE YOU HAVE READ THIS (Re-Re-Repost)

RedApple•

9 years ago•44 Replies

Another reminder to everyone that:

This is a patient to patient forum and

no one, including the Admin Team, on this community should be assumed to have medical training of any sort.

Everyone is only speaking from their own experience, that of friends/family or other people they may have spoken to.

People MAY be able to evidence some of their information by linking to research or reliable websites, or quoting from well researched books and if at all possible this should be done when making 'definite' statements.

Just because something worked for you, this categorically does not mean that it will work for everyone, or indeed anyone, else! Please can everyone remember that in everything that they post.

Everyone is entitled to have their opinions listened to and respected, this does not mean that everyone has to agree with them, but please keep arguing to a minimum and personal snipes and attacks should be avoided at all costs.

We have Posting Guidelines which are there to aid with the smooth running of the site and the comfort and safety of everyone.

Please can everyone take a moment to read (or re-read) the Guidelines.

healthunlocked.com/thyroidu...

Thank you.

Written by

RedApple

To view profiles and participate in discussions please or .

44 Replies

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RedApple9 years ago

I will add to my post above, that this is the case for EVERY community on Health Unlocked, not just for Thyroid UK Support.

I have added a screen shot to my post, which shows the information from Health Unlocked on the matter of medical advice, which can be found by following this link

support.healthunlocked.com/...

Marz9 years ago

I would also like to say that if people read the Profiles by clicking onto the names of Posters - then they would see that we are fellow sufferers and NOT Medical people

Of course only if they have completed their Profiles......

bantam12• in reply toMarz9 years ago

But as highlighted in a recent post where advice given has gone badly wrong, some members may not be computer savvy enough or mentally up to navigating the forum to find out and understand the information as given above.

On a daily basis we see members given specific treatments and dosage advice when nothing is known of that member other than what has been written in their post or possibly in their profile, there could be medical/drug contraindications or complications that they themselves are not aware of so in following advice from a random person they may be putting themselves at risk.

It should be possible to put a disclaimer at the top of each post so everybody is aware that replies are not from medically trained people unless stated otherwise.

Marz• in reply tobantam129 years ago

Of course you are absolutely right. I have lost count of the times I have mentioned I am just a fellow sufferer and not a medical person - however perhaps not with every post.... APOLOGIES

MMG207• in reply toMarz9 years ago

I completed my profile but when I clicked to enter it, nothing happened. When I went to leave the page a message came up asking if I was sure I wanted to leave without posting. Don't know what I was doing wrong, but I tried and tried to post it and nothing happened.

I don't know if anyone else has had this happen to them. It just might explain why there are so few profiles posted.

cindy2002• in reply toMMG2078 years ago

I too have had the same problem! I completed my profile only to have it pop up with the same message that if I left, nothing would post. I tried everything I knew to do. I had the same msg pop up. I was unable to complete my profile and I am still unclear as to why. I am a newbie to this and perhaps an admin can advise those of us who have not been able to complete our profiles.

Thanks so much,

Cindy

helvella• in reply tocindy20028 years ago

You are lucky someone noticed your response down here on a two-year-old thread!

Contact HealthUnlocked:

support.healthunlocked.com/

Also, try using a different computer, a different browser, even (just possibly) a different connection to the internet. You can always use one of the In Private options on most browsers if a friend will let you use theirs for a few minutes.

Prepare the text of your profile in a text editor or word processor - don't type it directly - then if it fails, you can still save it and copy or email it to another computer!

galathea9 years ago

I too have been alarmed at some of the specific dosing 'advice' which is sometimes given. scary stuff!

Xx g

asmile4u9 years ago

Is there a way to send something to members that states this, that they have to acknowledge? For example, when I sign up for anything apple, they make me read and check a disclaimer before proceeding. Though I don't remember if this was already being done when I signed up.

RedApple• in reply toasmile4u9 years ago

When someone signs up to Thyroid UK Support, they are sent a welcome message. In that message is a link to our Posting Guidelines, which they are asked to read before they participate. Of particular relevance to this post are these:

9. People Posting and/or answering on the site should not be assumed to be health professionals.

10. Posts, Answers and Comments posted on the website should be designed to support, not replace, medical advice.

Unfortunately we don't have any way to ensure anyone reads them, or even a tick box to say they have read them.

I'm quite sure the vast majority of people do not even read the welcome message itself, let alone the guidelines

In case anyone reading this is wondering, the Posting Guidelines are here

healthunlocked.com/thyroidu...

asmile4u• in reply toRedApple9 years ago

Sorry to hear that most people don't read the posting guidelines.

SAMBS• in reply toRedApple9 years ago

re your comment about knowing or not if people read the guidelines, perhaps a 'read it' button at bottom, similar to our like buttons on here?

autiemuse• in reply toRedApple8 years ago

Just fyi, I signed up today but did not receive a welcome nor guidelines! Thought you'd want to know this.

helvella• in reply toautiemuse8 years ago

This is the current welcome message:

Welcome to the Thyroid UK community, a free resource which connects you with other people affected by thyroid disease and related disorders.

Thyroid UK is moderated by an Admin Team, the majority of whom are fellow patients, they willingly give up their time to moderate the site on a volunteer basis and are not medically qualified.

Before using the site, please read through our Posting Guidelines:

healthunlocked.com/thyroidu...

Unfortunately, all online forums (including this one) are sometimes subjected to malicious and/or abusive attacks (trolling). Should you receive a private message or a comment on one of your threads which you consider malicious or abusive please do not hesitate to report it:

support.healthunlocked.com/...

We look forward to seeing you participate in this great community!

Lyn Mynott

Thyroid UK

The guidelines are linked above, and are also one of the Pinned Posts when viewing posts here.

socratesanne• in reply toRedApple4 years ago

Read the rules, but wonder if someone is a specialist in a field? They might be on this site for personal reasons, and might be helpful, i.e. like take a deep breath, is that considered a breach of rules? I wonder where professionals who are quarantined or elderly, lost loved ones with no access to direct dialogue, where would they best go for guidance or all professionals to just hang back, watch and keep shut if wrong advice is given? When a suggestion arises that one thinks would be more helpful without saying so, what should be said or not said. I know this is probably as clear as mud but I am a human being and just wanted some guidance. Sometimes it is second nature the way many of us relate to others in need minus, of course, professional advice, but where does that start or end and who judges, since the internet does it constantly with people you know are not professionals. There are so many professionals who do not give adequate advice as well or they leave people on here with confusion. Would it be wrong to suggest they go back to that provider for more additional guidance or wold this be interference? When does it seem you cross the line between the two and how is that graded?

RedApple• in reply tosocratesanne4 years ago

socratesanne, Of course there might be qualified/specialist individuals here on the forum, for all sorts of reasons. Medical professionals can be patients too But no-one on this forum should assume (or believe) that any advice offered by members here, is given in any professional capacity.

9 years ago

Thanks for info. Received and understood

SAMBS9 years ago

I have read another timely reminder to us all Red Apple - thanks

reference info and recommendations written by members, Also I assume there is a BIG DIFFERENCE between having HYPO/HYPER Thyroiditis and the AUTOIMMUNE type of the condition. Not everyone has the auto immune type do they? There is a difference in blood tests and or readings I think, from what I have read and learning about the subject - it's getting the doctors to do the tests initially that is the biggest problem, especially when autoimmunity means we have or are producing antigens!

I also assume, it could mean that those who only have the ordinary thyroid problem and have stayed on Levethyroxine only, eat a healthy diet and have a healthy lifestyle, which means not drinking regularly or too much alcohol also!

I try to remember to always, I hope , emphasise Im writing about 'what worked or not' for me and urged others to do their own research on websites, like I did and found, like drugs.com or labtestsonline, plus others. yes it's good to ask questions of others, I e said before I'll say again, it's TUK that put me on path to finding out about all the subsequent health problems I've had.

I agree with the post, and yes I would hesitate to recommend anyone to eat or buy this or that! I shudder with horror when I see users writing they are going to order this or that online when sometimes they dont appear to understand that just going off into the unknown and swallowing this or that, could do all sorts of things to them, which may have an effect on a different organ, not just the Thyroid!

There are too many suggested links on search engines that you could go into, where the site makes all sorts of claims their product will do this or that - before you know it this anonymous site, has your bank card details, the product could be made up of talc and a few toxic chemicals or not - or you don't receive the product. I urge everyone to carefully look at websites like that before making any hasty or rash decisions to buy!

Perhaps people do get what they want or expected but if not, I would urge that they do come back on here and tell everybody if they bought from a duff or worse Website and if the product purchased worked for them or not!

Sort, hope I haven't hi-jacked the purpose of the post!

Baggiebod9 years ago

Have read and I am happy to continue to enjoy the benefit of unqualified advice based on experience, many thanks - don't know what I would have done without this site over the last few months xx

maggi999• in reply toBaggiebod9 years ago

I'm with you Baggiebod, I've learned so much from this site, it has helped me understand my thyroid problems - I WOULD NEVER HAVE BEEN GIVEN SUCH INSIGHT BY ANY DOCTOR!!!!

Baggiebod• in reply tomaggi9999 years ago

Absolutely, when I spoke to my GP on a phone consultation, I mentioned that I felt better with 50mcg of Levo as some of my symptoms were Improving and when she reduced it to 25mcgs they came back, although she agreed to increase the dose back up to 50mcgs because at that dosage my TSH was still in the normal range. The last comment she made was that she would probably feel better on 100mcgs of Levo but that doesn't mean it would be a good idea as her blood result would show a TSH below the normal range. I despair....

Mabes9 years ago

Acknowledging I read it. Thanks

0079999 years ago

read it

Jose6519 years ago

Read it, thank you

0079999 years ago

read it

Barb19499 years ago

Read.

hotcherry9 years ago

Read and understood

hotcherry9 years ago

Read & understood

9 years ago

Thank you acknowledged

Paddy479 years ago

I have not found this site ,to be of any help.

Clutter• in reply toPaddy479 years ago

Welcome to the forum, Paddy47.

If you post a question outlining your problem and recent thyroid results with ranges, members will try to help you.

Paddy47• in reply toClutter9 years ago

I do not have any problem with my thyrods. I am having problems with an over active nervous Stomach.

RedApple• in reply toPaddy479 years ago

Then you are in the wrong forum Paddy47. This forum is only for people with thyroid disorders.

You might do better by visiting a medical professional to discuss your stomach problem. But if you want to discuss with fellow patients, then look for a more appropriate forum by going here:

healthunlocked.com/find

Paddy479 years ago

So sorry about this. Thank You.

elgranero59 years ago

Read,,,

recovered79 years ago

I think we all understand this but, at times when we feel desperate we do tend to forget. I know when i ask for help it really is only because i am desperate for understanding from those on this post and also for some insight from those that may have been suffering similar symptoms. It doesn't hurt to be reminded of these guidelines though. I sometime's think I would be quite distressed if i didn't have this Forum to relate to.

SAMBS• in reply torecovered79 years ago

Me too, despite my previous comments and queries! I basically tend to follow /read Admin suggestions most, but also taking note of what other members say.

Sadly what I didn't get much of an answer to was the different aspects of Thyroidism and being autoimmune, I just read last night that autoimmunity is connected with PBC, this is why I am confused! Too many symptoms can be similiar to both.

Dosing up on extra Vit's and/or minerals might be good for the Thyroid,but not so good for the liver. I suggest TSH blood tests might be right or wrong for the thyroid, but if my Autommunity stems from PRIMARY biliary cirrhosis (I'm the one calling it PBC, because the doctors havent decided what or why, although they have discounted the 2 usual and more common reasons) and I also now know I need specific testing for antigens In the liver) T cells again if I remember correctly, relative to the organ not the gland!

Which is why it's worth considering other chronic conditions, people with Thyroid problems, also have. Something doctors Should be doing and aren't!

Miniliz9 years ago

When I joined I took it as a given that the people posting here were those with rich personal experience and not necessarily medical qualifications. The welcome message merely confirmed this. It would be very bizarre to take advice from the forum, however valuable and useful it may be, as if it was from a doctor.

But keep replying to our questions everyone - it's so helpful and I hope one day to be able to offer advice, once I've secured a diagnosis and successful treatment!